Re: quick update on Alyssa

[Guest guest]

Guys I am so sorry that it took so long to get back with you well things

don't look so good here.. they think Alyssa is diabetic and they know that

she isn't getting enough calories her potassium is too low her sodiom is

too high her urine too dilitued and the list goes on. It is possible that

her kidneys are messed up and they don't have a idea on what to do. The

mention of TPN was brought up today and the DR thinks at this point is too

damaging to her liver. He also thinks that the prednisone has played a big

part in this and is not sure how to go with this his words. He is calling Dr

kelly now and wants Alyssa there by the end of the week, I am not sure what

else they are going to do. I mean what else can be done? They have already

did a head CT and a few other things and I am waitng on phone calls to know

what to do. My mother is so angry at me because I let them put her back on

prednisone and she just doesn't understand I feel like I had no choice I

could have refused but she kept throwing up, I just thought It would fix

things, and now maybe I have actually doomed her. so guys PLEASE PRAY HAVE

YOUR CHURCHES PRAY. I am scared to death thanks Tina AND TO RHONDA

THANKS FOR TALKING SOME SENCE IN TO ME I JUST FELT THAT I COULD KEEP

HANDLEING THINGS ALONE AND I FOUND OUT THAT I CAN'T. THANKS FOR BEING

THERE!!!!!!!!!

[Guest guest]

Tina, I will spread the word to pray for Alyssa to all my friends. I have

been thinking and worrying about you both all day.

hugs,

Cathy

mom to 12, AS, EE, allergic to soy, nuts, peanuts, tomato, rice,

carrot, string bean, kidney bean, orange, pear, onion, mustard seed, grape

[Guest guest]

Tina you are doing the best you know how to do. Be thankful that you have a

doctor who admits he doesn't know what to do and is willing to refer you.

As for your mother, well as a Grandmother I can tell you that we don't

always agree with what our children do, but the bottom line is that you

should listen to her and then you have to make your own decisions. It was

the same thing with my parents. They still don't always agree with what I

do with my kids. I think that is the way of the world.

I plan to contact my church and put you both on the prayer list. You have

not been far from my thoughts and I am always looking for your updates. I

am still hoping you find answers soon. There is a time to handle things on

your own and a time to demand help. Glad you are getting the help you need.

Judy

Re: [eosinophilic gastroenteritis] quick update on Alyssa

> From: Ssrams@...

>

> Guys I am so sorry that it took so long to get back with you well things

> don't look so good here.. they think Alyssa is diabetic and they know

that

> she isn't getting enough calories her potassium is too low her sodiom is

> too high her urine too dilitued and the list goes on. It is possible

that

> her kidneys are messed up and they don't have a idea on what to do. The

> mention of TPN was brought up today and the DR thinks at this point is too

> damaging to her liver. He also thinks that the prednisone has played a

big

> part in this and is not sure how to go with this his words. He is calling

Dr

> kelly now and wants Alyssa there by the end of the week, I am not sure

what

> else they are going to do. I mean what else can be done? They have

already

> did a head CT and a few other things and I am waitng on phone calls to

know

> what to do. My mother is so angry at me because I let them put her back

on

> prednisone and she just doesn't understand I feel like I had no choice I

> could have refused but she kept throwing up, I just thought It would fix

> things, and now maybe I have actually doomed her. so guys PLEASE PRAY HAVE

> YOUR CHURCHES PRAY. I am scared to death thanks Tina AND TO

RHONDA

> THANKS FOR TALKING SOME SENCE IN TO ME I JUST FELT THAT I COULD KEEP

> HANDLEING THINGS ALONE AND I FOUND OUT THAT I CAN'T. THANKS FOR BEING

> THERE!!!!!!!!!

>

> >

[Guest guest]

Hang in there. Don't beat yourself up on the prednisone issue. Sometimes you

just have to look at the greater good. My kids were on huge doses for almost a

YEAR, but HEY -- they stopped vomiting, they stopped hurting and they started

eating... sometimes it's the extended families who make things HARDER instead

of EASIER. (their job is to support you, not judge you, or try to influence

YOUR decisions).

I hope she doesnt end up on TPN but if she does, we're here for you and

and I can give you the info on a great TPN support group. One of the kids there

has been on it for 12 years (that is an exception but it is still encouraging)

Dr. is a good source of information on EE, he is pretty good with EG too.

He's seen more of it than most peds GIs have..I think most on this list have

seen him. I took all five of mine up to see him earlier this year. If there

are any questions about motility, you really need to get her up to Pittsburgh

and Dr. DiLorenzo, and pronto.

At this point, i really wonder if a short burst (a week or two) on TPN might not

be such a bad idea to reset her system and give her some bowel rest. It can

also be done through a PICC line, which is a little easier placed and removed

than a subclavian central line. The diabetic issue would have to be settled

first, however. TPN can make the blood sugar go NUTS. Mine shot up over 300

when I started it.

Hang in there. Try to get breaks for yourself. Remember, things WILL get

better. You're just on that roller coaster and the straight tracks will come.

Don't listen to ANYONE who isnt supportive. Dont even call them if they only

bring you down. YOu have to concentrate on you and Alyssa now.

Steph.

Re: [eosinophilic gastroenteritis] quick update on Alyssa

Guys I am so sorry that it took so long to get back with you well things

don't look so good here.. they think Alyssa is diabetic and they know that

she isn't getting enough calories her potassium is too low her sodiom is

too high her urine too dilitued and the list goes on. It is possible that

her kidneys are messed up and they don't have a idea on what to do. The

mention of TPN was brought up today and the DR thinks at this point is too

damaging to her liver. He also thinks that the prednisone has played a big

part in this and is not sure how to go with this his words. He is calling

Dr

kelly now and wants Alyssa there by the end of the week, I am not sure what

else they are going to do. I mean what else can be done? They have already

did a head CT and a few other things and I am waitng on phone calls to know

what to do. My mother is so angry at me because I let them put her back on

prednisone and she just doesn't understand I feel like I had no choice I

could have refused but she kept throwing up, I just thought It would fix

things, and now maybe I have actually doomed her. so guys PLEASE PRAY HAVE

YOUR CHURCHES PRAY. I am scared to death thanks Tina AND TO

RHONDA

THANKS FOR TALKING SOME SENCE IN TO ME I JUST FELT THAT I COULD KEEP

HANDLEING THINGS ALONE AND I FOUND OUT THAT I CAN'T. THANKS FOR BEING

THERE!!!!!!!!!